This directory is for AN
Archive visitors, where you can read about those who have traveled the AN path
before you -- to know you are not alone, to see that others have been through it
before, and to benefit from their experience. Underlined
names are linked to the patient's story, as an additional resource.

Feel free to contact
anyone listed here if their AN experience is relevant to you.Countries currently
represented: Australia, Brazil, Canada, France, Great Britain, Italy, Israel, Japan, South
Africa, USA. We know that finding out about your AN treatment options is a struggle - we want to help!

If you are a newly diagnosed
patient looking for an on-line support group rather than individual stories, we
recommend the AN patient mailing list:
http://www.anworld.com/mailinglist/

Note: All e-mail addresses
are in brackets; to protect from "web harvesters", the @ sign in the
addresses is replaced by " AT "; sometimes, the "." dot is replaced by
" DOT". Please change it back before sending mail!

Wait-and-watchers:
an exercise in patience

Jake B. -
Waiting and seeing, Dr. Irving, QE Hospital, Birmingham, UK. Diagnosis: 12/99, 8mm. Symptoms: Noticed 3/99 that I
couldn't hear watch ticking on left side. Progress: hearing test 2/00
indicated further hearing loss; was told this is likely to indicate tumour was growing.
Repeat scan 7/00, no detectable growth, no further hearing loss. Next scan 2001.
Contact: <jake AT on-edie.net>. Comments: Went to see Mr Moffat in Cambridge, (GP refused NHS referral,
it would appear that this could be legally challenged if one had nothing else to do). He
recommended translab as hearing loss likely regardless of approach and is less intrusive
in brain area. Went to see expert in radiotherapy at Sheffield (on NHS), he said either
gamma knife or translab. My consultant recommends retro, he also agrees to use of steroids
if hearing suddenly deteriorates. Following Sid's lead I too take 10g of vit C a day. Also
Chinese medicine. Too soon to say whether it has any effect. As estrogen has been possibly
linked to AN growth, I avoid dairy produce and hormone treated meat, as around half the
estrogen comes from dietary sources. I accept all this might be ineffectual or misguided,
but I doubt it will do me harm.

Sid Beinart -
taking "enormous amount" of vitamin/supplementsDiagnosis: 10/94 1.3 cm. at age 72. Symptoms: 60% loss
of hearing (rt ear), slight balance problem. Progress: Every six
months I have MRI to see if there is any change. (10/01) There has
been no change in size of tumor or in any of the symptoms, after six and a half years. I
have been taking enormous amounts amounts of supplemements especially Vitamin C, E,
Selenium, glutathione, and NAC (for research check out Linus Pauling, Robert
Cathcart,
Gary Null, and Inez Petersen). (4/02) My recent MRI shows no tumor
growth; this is after 8 years. Also no change in any symptoms. Still taking large
amounts of supplements. (9/25/03) MRI
today revealed no change in size of AN tumor, after nine years. There is
also no change in any of previously reported symptoms; in fact, balance is
improved. I continue to take enormous amounts of supplements previously
noted. I have recently added quercetin and ginko biloba in
generous amounts. Comments: I was in the military in World War II,
serving in N. Africa and Italy. I would welcome any questions and will repy to all
e-mails, though I
am not a medical doctor. Contact: <sidbeinart AT aol.com>.

Marilyn Bush-after five years, turns out to
have a petrosal vein rather than an AN.Diagnosed: 4/98, at age 50, 1cm. Symptoms: High frequency hearing loss,
tinnitus. Progress: (11/99) There has been no change in the
size of the AN or my hearing. I am relieved. I feel that the longer I wait, technology
will continue to improve. Who knows, they might even develop a medication to target these
Neuromas. (11/00) My hearing test is just the same as a year ago. My ENT
also said he could not see any change on the MRI... I would prefer to wait and watch for a
while longer. Two more years and I will be a retired school teacher. (11/02)
After 5 years the radiologist reported that there was no sign of an AN and
instead it was a petrosal vein! I am shocked to say the least. I have
emailed a Neurosurgeon, Dr. Barnett, at the Cleveland Clinic that I went to
in 1998 for a second opinion and also a Dr. Neff. Both say a petrosal vein
is a natural structure requiring no further treatment. This is one for the
books. Contact:
<MJBush AT aol.com>, (716) 632-2708

Kenneth Carpenter - has
written a booklet on ANs to educate his ENT
Diagnosis: 1/99, 15 x 12 mm. Progress: no change 6 months
later. Contact: <kvc2 AT cox.net>. Comments:
I enjoy helping others research their particular situations regarding Acoustic Neuromas. I
have volumes of information no my hard drive and will be more than happy to share this and
attempt to answer any question other ANers may have.

Bob E.Diagnosis: 12/99, 1.3cm AN in main portion but tumor is in two parts;
discovered during MRI for migraines. Appears to involve the 9th and 10th cranial nerves
more than 7th and 8th. Symptoms: No symptoms other than extremely minor,
infrequent, dizziness which doctor says may be unrelated. Headaches are gone thanks to
Zomig migraine medication. Progress: As of 10/00 there is debate as to
whether there is any growth - in other words not enough to notice. Comments:
From the beginning, I took an analytical approach to the situation. I have copies made of
all MRI's and have learned how to read them and how the MRI software works. Even
found a mistake in size measurement due to MRI magnification change! I am getting plenty
of exercise, drinking lots of water and green tea, and taking decaf green tea extract.
EGCG in green tea is thought to be an antiangiogenesis chemical. I feel very lucky to have
been spared symptoms for the last year. I've travelled, emailed and researched. It has
been an interesting experience. Have visited IMRT (peacock) facility, FSR (Johns-Hopkins),
and surgeons. If treatment is necessary I will probably go with FSR or IMRT. I
would be glad to correspond with anyone about what I have seen an learned over the last
year.Contact: <ROBERT.E AT prodigy.net>

Carolyn
FreemanDiagnosed: 4/94, 1.5 AN. Progress: no change on the MRI in
August 1999. Contact: <Spiritwlk AT aol.com>

Andrew Gregg -
knows how to read his own MRIs; <gregg AT alpha.fdu.edu>

Don Guy - may have a meningiomaDiagnosed: 4/98, 5mm AN at age 59. Progress
(11/02): the tumor still shows no sign of further growth. Contact: <dguy4 AT cox.net>. Lives inTulsa,
OK.

Dave Keyes -
Tumor's on the right, but hearing and ringing are worse on the left side.Diagnosed: 7/00, 3mm right AN at age 47. Symptoms:
mild hearing loss and tinnitus; hearing and ringing are worse on the left side. Comments:
I'm scheduled for a 2nd MRI in 3 months to see if it's growing. If it isn't I'll probably
continue to monitor. Contact: Feel free to e-mail with questions or
suggestions to <Davekeyes AT home.com>. Lives in: Birmingham,
Alabama.

Minda Lazarov - have had cancer 5 times and have had neurofibromas
removed from my head.Diagnosed: age 43, AN 2.2 cm; treatment not yet decided. Contact: <sullaz
AT edge.net>. Lives in Nashville, TN.

William Peters
- retired systems/navigation engineerDiagnosed: 3/98 MRI with 1mm slices showed tumor size of 3x7 mm, at age
74. Symptoms: First symptoms 6/97, unsteadiness; 8/97 some hearing loss.
10/97 100% hearing loss right ear.Tinnitus is in my right ear, as
a function of noise environment. Progress: My unsteadiness
improved (decreased) when I had upper eyelid surgery to improve my vision. Good,
supportive shoes also help. Comments: (10/97) MRI showed indistinct tumor;
(3/98) the second MRI took 2 1/2 hours! I suffer from claustrophobia and overcome this by
closing my eyes and keeping them closed throughout. Contact: <wpeters
AT suffolk.lib.ny.us>

Mary RodeDiagnosed: 1994 at age 46, 4mm. Symptoms: Noticed that I
was unable to hear on the phone. Hearing has gotten much worse, but the tumor has not
grown at all (I have an MRI every year). I have some tinnitus, especially at night when I
first lie down. Slight loss of balance occasionally. Comments: I did a
lot of research in the beginning and saw 5 doctors. Very few recommended anything except
traditional surgery. However, when one told me that if I were his wife he would advise me
to wait and see, it seemed like the right answer to me. I hope the symptoms will not get
worse and that no treatment will be necessary. However, I have decided that if the tumor
starts to grow, I will have some form of FSR. Hopefully if that time comes, there will be
more long-term research available on the various options. FYI on estrogen: I have
taken estrogen for 10 years. It appears to have no impact on my tumor growth for me. Contact:
<Mary.Rode AT TCCD.NET>, tel. 817-485-0123 (evening).

Bob SeanorDiagnosed: 9mm AN (right side), 11/96 at age 45. Symptoms:
hearing loss (noticed using telephone at work) and a very slight ringing noise... I
thought I had wax in my ears. Results: for 3 years, no growth and
no hearing loss. Now I notice that my ear ringing (tinnitus) seems louder and my
balance is getting worse. But no other symptoms, headache, numbness etc. etc. Comment:
I am glad I have waited this long and hopefully my tumor will continue to not want to get
bigger. Contact: <bsganemo AT aol.com>

Barney Sherman
- hoping he'll never need treatmentDiagnosed: 1994, at age 67. Comment: (3/05)
It is now over 10 years that my Acoustic Neuroma was
diagnosed and my hearing is still good and I am still a Wait & Watcher. The AN
has not grown and may have actually shrunk a bit. I will be 78 in Sept. of
2005 and I think that I will not take any more MRI's. "My story" may not be
typical but before anyone rushes out to have surgery, etc. on a newly
discovered AN, make sure to get the best medical advise and do not put your
trust in just one Doctor. I am happy that I never had any treatment;
and to think that the surgeons were ready "to cut", back in 1994. Lives
in CA. Contact: <bnsherman AT aol.com>, phone 925-933-2048.

Beverly TinkhamDiagnosed: 5/97, 3mm AN at age 51. Symptoms: Hearing normal for age,
tinnitus since 12/97. Progress: 3rd MRI - 12/98 still 3mm, no change in
hearing. Increasing tinnitus, occasional balance problems and more episodes of BPPV since
the second MRI. Contact: <Bev189 AT aol.com>. Lives in Chicago.

Elizabeth TurnerDiagnosed: 12/98, 4mm. Symptoms: loss of hearing,
balance problems. I went to answer the telephone and heard nothing but static. Regained
60% of hearing. Progress: still same as of 7/99. I do not want to
have surgery. Contact: <et19401912 AT tsixroads.com>

Don Wiggins -Diagnosed: 11/96, 8mm AN at age 66. Symptoms: Tinnitus, chronic minor
dizziness, and room-spinning dizziness 3-or-4 times per year. Progress: Recent loss
of hearing now at 40%. No growth of AN as of 8/98 MRI. Contact: <jodowig AT
aol.com>.

Dick Barker - GK (1991), Dr. Ladislau Steiner in VirginiaDick contributed a piece on AN's symptoms; Dick's wife June,
a physiology researcher, wrote an essay on radiosurgery. Diagnosed:
1.2cm right ear, age 61 at the time. Result: tumor has shrunk 33% since
treatment, no problems since, now monitoring at 2-yr intervals. Contact:
<RBarker465 AT aol.com>

Audra Bradshaw - GK (2/99), Dr. Kondziolka, University of Pittsburgh
Medical CtrDiagnosed: 10/98, left 2.5cm AN. Symptoms: 50% hearing loss in left
ear. Result: hearing has remained the same, and no side effects from
GK. Contact: <rosarosa AT swbell.net>. Lives in San Antonio,
Texas. Comment: I would be happy to answer any questions about my GK
treatment.

Ron Guerriero
- GK (8/97), University of PittsburghDiagnosed: 6/97, right side AN 2.8cm. Symptoms: trigeminal neuralgia
(face pain). Result: facial pain stopped within 45 days.
MRI 2/98: reduced to 2.4cm; MRI 8/98: reduced to 1.9cm; MRI 3/99: reduced to 1.3cm;
12/99: my AN has been reduced to approx 1/2 its size and I've had very little side
effects... just an occasional "twinge" episode lasting for a few days (most
likely as the tumor shrinks and pulls away from the nerve). Contact:
<guerriero AT mediaone.net>, tel. 617-543-6316. Lives in Boston area,
MA. Comment: please feel free to get in touch with me.

Peter
Jackson - GK (3/02), Cromwell
Hospital in London.An Englishman who was diagnosed in Texas. Diagnosed:3/99
at age 43, 0.5x0.5x0.4 cm AN. Symptoms: temporary, partial hearing loss,
slight tinnitus, fullness in left ear. Progress: (3/01)
Still small, but growing at 1.5mm/year! Hearing fine, tinnitus mild and continuous,
tingling left side of face, rare brief dizzy spells, occasional balance problems. (2/02)
AN more than doubled in size and continuing to grow, but no serious
symptoms. Result: Clearly I will have
to wait quite a while before seeing a result and I will keep you posted. Comments: I would be pleased to correspond with
anyone especially about 'the waiting game!'. I am always very happy to exchange
emails etc. Contact: <jackson.miltonhouse
AT btopenworld.com. Lives in: England.

Andrea Kennedy - GK (4/97), Dr. Georg Noren, Rhode Island Hospital.Story has a good description of the treatment. Diagnosed: 3/97 with a 2.1 x
2.8 cm at age 57. Symptoms: loss of hearing in left ear and a little balance
problem. Result: The 1 year MRI showed a large black spot which shows that it
is dying. The tumor shrunk 3 mm. Contact: 1 Old Dodgingtown Rd., Bethel, CT
06801-3213. <Pelican AT aol.com>

Bob Kretow -
GK (10/98), Dr. Dade Lunsford, UPMCDiagnosis: 10/98, 0.5mm AN left ear, at age 55. Symptoms:
some hearing loss, slight dizzyness, tinnitus both ears. Result:
almost complete hearing loss in left ear, dizzyness gone, tinnitus worse in left ear and
same in right ear. Comment: I am an epoxy resin chemist, had polio 1949,
lyme disease 1988. Anyone have something similar in their history? Contact:
<rakretow AT aol.com>

Dick McCaughin
- GK (2/96) in Pittsburgh; L. Dade Lunsford, M.D.
Had an Arachnoid cyst andand AN. Diagnosed:
7/95 at age 57, 1.x1.5 cm. Symptoms: mild tinitus, 50+ % hearing loss. Result:
tumor is smaller now, tinnitus a little louder, hearing about the same. Comment:
I work as a sales and marketing rep for the Albany Open MRI; I'd be happy to talk to
anyone about my experiences. Contact: <Dick583 AT aol.com> or call
me at the MRI Center at 518-435-1234.

Jack Miller - GK (3/98) in MiamiDiagnosed: 1/98 at age 50, 5 mm left-sided. Symptoms: lost hearing
left ear 6 years prior, and four years prior, both times recovered after steroids. Result:
lost hearing again early May, followed again by steroids. No complications other than side
effects from steroids. Contact: <JMillerCPA AT aol.com>. Lives
in Miami Fl.

Bill Shaw- GK (5/99) Prof. Christer Lindquist
at Cromwell Hospital, LondonDiagnosed: 3/99, 2.2 cm at age 53. Symptoms: High frequency
hearing degradation, first noticed 10 years ago, but put down to service in the Royal
Navy; has deteriorated in last 12
months. Results: First MRI scan after treatment showed
tumour had enlarged considerably as was predicted. Now some 40 months later,
the AN appears to be much reduced in size and the previous symptoms of
tinnitus and headaches have disappeared. Comments: I feel strongly that
Gamma Knife should be the first choice for all AN sufferers.Contact: <bill AT
chutecadley.fsnet.co.uk>, tel. (44)1264-730-328, fax (44)1264-730-742. Lives in
England.

Lynn Skousen - GK (6/98), Dr. Kenneth Ott,
Neurosurgeon, San Diego GK Ctr, La Jolla, CADiagnosed: 4/98, 2cm x 1cm AN at age 53. Symptoms: Tinnitus
continuously for 5 years, some hearing loss at that point, could still hear using the
phone. Result: lost most hearing in that ear, can no longer hear on the
phone. Around 6 months post-treatment, experienced several attacks of trigeminal
nerve pain, each lasting from about 10 hrs to 2 days. (6/02) My AN
now measures 1.4 x 0.6 cm. My hearing loss remains the same, as does the tinnitus and
slight balance problems.Contact:
<LSko590387 AT aol.com>. Lives in Phoenix, AZ.

Bobbie
Towbin - GK
(9/98), Dr. Herb Fried, Gamma Knife Ctr at St. Anthony's Hosp., Denver CO.Diagnosed: 7/98, l.5 cm right-side AN at age 59. Symptoms:
high-frequency hearing loss, tinnitus and slight balance problems. Results:
Following radiosurgery I had a headache that lasted about 4 weeks - although I am prone to
migraines and tension headaches anyway. I also experienced fatigue for about 4 months and
slight depression for about the same period of time. No other problems. Contact:
<ebtow AT aol.com>.

John Baransy - Cyberknife
9/03, Dr. Chang at Stanford, Palo Alto, CA.Story has good description of Cyberknife treatment.Diagnosis: 5/03 at age 64, 1.1 x 1.7 cm AN on left side. Symptoms:
profound loss of hearing in the left ear, vertigo attacks. Results:
fatigue right after treatment. Comments: I
will update at 6 months and one year. Lives in: Chicago,
Illinois.

Mark McLaren -
Cyberknife (11/01), Dr. Steven Chang
at Stanford, Palo Alto, CA..Diagnosis: 2 cm right ear AN in 4/01 at age 44. Symptoms:
Moderate high range hearing loss over 10 year period before diagnosis. Result
(at 6 mo):
Treatment had no significant issues and no interruption of daily lifestyle. Only after
effect to date was a 2-3 hour bout of vertigo six weeks after treatment. 6 month check up
showed that AN had darkened indicating necrosis and had shrunk approximately 12% in
volume. Result (at 1 year): The AN is slightly smaller
compared to the 6 month status. As Dr. Chang expected, it went from darkened
to white on the MRI and he felt 99% sure that it was dead. Balance and
facial function continue unaffected at 100% functionality. Hearing test
essentially unchanged from pre-treatment levels, but speech recognition in
the treated ear increased to 100% from a pre treatment level of 92%. The
micro hairs on the nerve showed an improvement which indicates that it
tolerated the radiation very well. Comment: I would be happy to share my experience with anyone. Contact:
<Calpedaler AT mindspring.com>.

at Stanford, Palo Alto, CA.
Diagnosed: 2/03 at age 62, a 12 x
7 x 4 mm acoustic neuroma on the right side. Symptoms: 2 days of
severe vertigo about a month apart with other days of light-headedness and
feeling a lack of balance. Tinnitus. Result:
In February of 2006 I had my 6-month post radiation MRI. It showed the tumor
to be 1 mm smaller and very slight darkening in the center. I have had some
hearing loss 6 months after treatment, but am hopeful it will improve.
Comment: I have prayers and Bible verses that are helping me
deal with this diagnosis. They can be found in A
Time to Heal with my hope that they help others on their AN journey. Contact: <dahvellines AT
ameritech.net>.

FSR patients

Debie
Aniol (mother of ANer Ben) - FSR 7/97 by Dr. Hall
(neurosurgeon) and Dr. Cho (radiation oncology) at University Hospital, Minneapolis.Diagnosed: 6/96, 10mm AN at age 13. Symptoms:
tinnitus and deafness in one ear. Results: at 1st follow-up MRI at
6 months after the FSR, there appeared to be some slight enlargement, which Dr felt was
due to inflammation. 2nd MRI at 9 months showed slight decrease and definite darkening of
the tumor. 6 months later (10/98) another MRI showed more darkening, but no decrease in
size. Ben is scheduled for his next MRI on June 1, 1999. Contact:
<maniol AT worldnet.att.net>

John Armitage
- FSR 2/99,Dr. Jeffery Williams at JHU.Good description of facial mask (for positioning during treatment). Diagnosed:
11/98, right-sided 2cm AN at age 63. Symptoms: Hearing loss and
tinnitus. Results: temporary tingling and numbness of
skin. Update (12/02)According to 3.5 year post-FSR MRI,
the AN has died and shrunk from its original 2.0 cm to 1.2 cm. I now hardly
notice my balance impairment, which is objectively the same as pre-FSR. My
hearing in that ear seems about the same. Comment: I am very happy
with my choice to go to Johns Hopkins. Contact: <johna AT gj.net>

Del Barwick - FSR 3/01, Dr. Robert Smee at the Prince of Wales hospital, Sydney,
Australia.The story by Del's husband John is a must-read for Australian AN patients!
Diagnosis: 11/00, 27x 22x16mm AN. Result: (after 18
months) The neuroma has not increased in size, and the MRI shows it is duying. Del has not
had any side effects from the treatment. Contact: Del's husband John at
<bowyang AT appt.net.au>. Comments: I have photos of all
the treatment and equipment. If anyone would like any more information or photos I
took please let me know by e-mail. Lives in: Australia.

Eric Bauer- FSR 3/97, Dr. Robert Behar, Columbia Spring Branch Medical Ctr, Houston,
TX.
Eric is a private pilot, FAA approved to continue flying.Diagnosed:
12/96, 1.8 cm. Symptoms:
slight decrease in hearing and constant ringing, which had started only the month before
(11/96). Result: (1/99) speech recognition in the bad ear has improved from a low
of 40% to between 60-90% (depending on the volume). The MRI shows no change in size. I
continue to fly and do other sports. The only problems are reduced hearing and tinnitus in
the left ear. (1/03) In 12/02, I had an MRI and
hearing test. Both essentially unchanged since the last tests in 2/01. I
have retained about 40% hearing in the affected ear. I continue to
participate normally in sports and other activities.Contact: <bauers AT
usa.com>. Lives in
Houston, TX.

Mike Boudreaux - FSR 10/98, Dr. Jeffery Williams at JHU.A very good description of pre-treatment research. Diagnosed: 8/14/98
at age 47, 2cm AN. Lives in Tulsa, Oklahoma, working as President of an Advertising
Company. Contact: <mboudre981 AT aol.com>, tel. (918) 746-7000.

Jim Clarke -
FSR 10/99 at SIUH with Dr. Lederman. 4 sessions over a week.Diagnosis: 2/99, 9x11x11 mm AN at age 59. Symptoms:
Sudden loss of right side hearing along with tinnitus and fullness a year before being
diagnosed with an AN. Result: Still has tinnitus, hearing has
remained the same (poor on the right). The first (3+ month) MRI shows that the AN is
dying. Comment: I was originally scheduled for surgery but at the
last minute I decided to look around at other options. The treatments themselves were
totally without pain, almost as though nothing was happening. I flew home the day
after my last treatment and was playing golf the next day. Contact:
<Jzc00 AT aol.com> and/or 650.948.1725. Lives in Los Altos, CA,
retired.

Patrick
Elliott - FSR (6/03), Dr.
Chen at the UCD Cancer Center in Sacramento, 28 sessions 180 rads eachDiagnosis: 3/02, 12x10x12 mm, right ear. Symptoms: dizziness in the morning, hearing
loss
and tinnitus in the right ear.Progress:
In
December of 2002 an MRI indicated the AN was now 16x 12x 14 mm.Result:
I expect to get an MRI in December, 2003. So far my hearing is about the same as it was before treatment.
Contact:<Maincouple
AT yahoo.com>

Daniel J. Fox -
FSR 8/00, Dr. J. Williams, Johns Hopkins Medical Ctr, Baltimore, MD
Diagnosis: 7/00 at age 48, 2.5 cm. Symptoms: Sensations
of pressure/fullness/stuffiness in right ear. Noticed that with a telephone in my right
ear, I had difficulty hearing! For 2 years, experienced sensations of mild numbness on the
right side of my face, tingling sensations in my lips, numbness and cold sensations in my upper right gums, sensations of
dripping/draining, etc. Result: The symptoms remain essentially the same.
My expectation is that, in time, the facial symptoms will disappear and the
fullness/stuffiness in the ear will go away. Contact: <Foxoutdoor AT
aol.com>, tel: 800-523-4332 (Office toll free telephone!). Occupation:
Business owner. Lives in: suburban Chicago. Comment: I
want to share my experience with other patients who have been recently diagnosed. I
arrived at the decision to undergo FSR, strictly through my own assessment. In the
process, I discovered that the medical profession is driven by economic and political
considerations andladen with conflicts. If a person has a medical condition that does not
have a definitive treatment plan, i.e. acoustic neuroma, the process that one goes through
to determine a treatment plan can be difficult, painful, & stressful. Please contact
me, and maybe I can shed a light, and hopefully eliminate the kind of anxiety and stress
that I encountered!

Kyoko Furukawa
- FSR (8/00) Dr. J. Williams, Johns Hopkins HospitalDiagnosis: 6/00 at age 51, 9x18 mm, left side. Symptoms:
(before) deafness, gradually deteriorating for 2 years, tinnitus. Comment:
Kyoko's husband, a pediatrician, couldn't find doctors or specialists on the radiosurgery
in their country (Japan). He knew that this country (US) has more than 10 GammaKnives and
2 CyberKnives and innumerable LINACs, just in case. Contact:
<fathersu AT po.sphere.ne.jp>. Lives in Japan.

Sandy Gilbert - FSR (8/01), Dr. Williams at
JHU.Her husband Bob's story has an excellent discussion of pre-treatment research,
and of FSR.Diagnosis: 5/01, 2.2 x 1.9 x 1.8 cm AN. Symptoms:
decreased hearing in her right ear, slight facial numbness, some light headedness,
fatigue. Comments: Convenience should not be a consideration when it
come to making your choice of where to go for treatment.If anyone
would like more detailed information on any of my research I will try to supply it in a
timely manner. Contact: <alwaysakid AT aol.com>.

Bonnie Greenspan - FSR (1/98), Dr. Dr. Jeffery Williams at JHU (5
treatments, 500 R each)Diagnosed: 5/98, right-sided 1.2 cm at age 76. Symptoms: Unsteady
gait, loss hearing in right ear. Results: Radiotherapy was very well
tolerated, the only symptom being some fatigue after the treatments. Contact:
<n520 AT itsa.ucsf.edu>, telephone: 415-751-7570, address: 59 Manzanita Ave, San
Francisco, CA, 94118. Comment: The setup at J Hopkins was very professional, very
pleasant to work with.

Louis H.EDITOR'S CHOICE - FSR
7/01, Dr. Gil Lederman at SIUH(after
wait-and-watching for 2.5 years)
Louis is a physician who became an AN patient and an AN student. What he learned
made him go against the advice of his colleagues.Diagnosed: 1/99 at
age 34, left-sided 7x13mm AN. Symptoms: hearing loss. Update:
(12/01) slight decrease in hearing. Lives in New Jersey. Contact
<lh1969 AT hotmail.com>

Charles Gruber
- FSR (2/00), 5 treatments 500 rads each, Dr. Williams at JHUDiagnosed: 1/00 at age 55, right-sided AN 1.7cm x 2.0cm. Symptoms:
slight balance problems, complete loss of hearing in right ear, tinnitus. Result:
same as before. Contact: <cgruber AT cgruber.com>, tel.
785.766.3400, address 1425 New York St., Lawrence KS 66044. Comment: I
have collected my story on the internet at http://www.cgruber.com/baltimore.html.
I'd be happy to have anyone read the story and to check out the pictures included.

Judy Habib - FSR (6/99), Dr. Gil Lederman at SIUH.Diagnosed: 3/99 at age 58, right-sided 2cm. Symptom:
some hearing loss in right ear. Result (11/99): Hearing loss
continues; tumor shrank 20%; Dr. Lederman expects the shrinking process to continue in the
foreseeable future. Comments (11/99): The treatment was so totally painless! In fact, between my second and third fraction, we
gave a party at our home for 26 of our son's college friends, 12 of whom slept over. The
day after my final treatment, my sisters came to visit from Florida and we did the town. I
was fine... enjoyed both the party and the visitors! Update (7/03):
I have had my followup MRI's done locally. My most recent MRI local
report in November 2002 states that the "overall size has not changed
dating back to 10/29/99." The radiologist told me that the tumor was
still alive. I do not have any other symptoms except additional
hearing loss in the affected ear. Comments
(7/03): I go again in
November 2003 to see what is going on now. I feel I am back in the
"wait and watch" mode. Lives in: New York.
Contact: <ejhabib AT aol.com>

Marvin Kelly - FSR (1/98), Dr. Gil Lederman at SIUHDiagnosed: summer'97. Result: tumor has shrunk by 20% in 1 year and I
have incurred no side effects - not while I was undergoing the 4 treatments and none
since. Contact: <Fletchkell AT aol.com>

Jerry Kemper
- FSR (4/98), Dr. Gil Lederman at SIUHStory has a good description of the treatment.Contact: <Pangloss
AT sybaweb.co.za>. Lives in South Africa

Rony
Kess-El -
FSR (3/98), Dr. Gil Lederman at SIUHRony is a conductor of the Kiryat
Bialik Youth Wind Orchestra. He has an in-treatment photo and a collection of
poems about his AN experience. Diagnosed: 1/98 at age 49, 3.3
cm. Result: In 10/98, had hydrocephalus and had a shunt operation in
Haifa, Israel. Now, the tumor has shrunk 50%. Lives in Kiryat Haim, Israel. Comments:
Rony is very active in the Israeli AN patient community. Contact:<kess-elro AT barak-online.net>, tel. (972)54-599-3193.

J.P. McDonough
- FSR (3/00), Dr. Williams at JHUMilitary officer, FSR paid for by the government. Diagnosis: 3.0
cm AN Jan 2000 at age 27. Symptoms: Tinitus in ear, minor hearing loss,
only discovered when getting physical for employment screening for FBI. Results:
Hearing has gotten better, some sickness after the radiation but none since. Comments:
Treatement has not affected me or my job at all. Contact: <kjbmcd AT
hotmail.com>.

K. Morris -
FSR (11/2000), Dr. Gil Lederman at SIUH,
New York City, New YorkK. Morris' story has great tips for monitoring your hearing.
Diagnosed: 10/2000, about 1 inch. Symptoms:
completely deaf in that ear for five to nine months; one
episode of imbalance that lasted only a few seconds; pain occasionally
radiated down my neck. Result: the symptoms are gone, except for
tinnitus; the hearing has improved.

Roberto
Procopio- FSR
(12/98), Dr. Gil Lederman at SIUH.Diagnosed 9/98, 2 cm AN at age 46 (and pressing the brain stem). Symptoms: severe balance problems; pressure in the back of the skull; a mild
hearing decrease in the affected left ear; some dizziness/sickness; loss of facial skin
sensation, due to the trigeminial nerve affected. Worsened tinnitus. Results: Four months later, I am
feeling sometimes better, sometimes the same as before, but never worse. I still work as a
salesman, in fact I am working much more than before the AN. (9/03)
Developed hydrocephalus, requiring a shunt. Contact: Tel +55
11 846-9389. E-mail:
<roberto_procopio AT uol.com.br>. Lives in Sao Paulo, Brazil.

Nita Shuhart
- FSR 9/00 right ear, 6/01 left, Dr. J. Williams, John Hopkins Hospital, MD. 5 sessions,
total 2500 radsHaving FSR 2 times within the same year. Diagnosis: 8/96 at age
65, bilateral acoustic neuromas, NF2, right 1.5cm, left 1.7 cm. Symptoms:
Sudden loss of hearing in the right ear. Observation: Waited and
watched for over 4 years, MRI's showed 1-2mm growth each year. Have worn 2 hearing aids
since 1997. By 5/99, right caused hearing drop to a 55% normal hearing level; left
retained 85% normal hearing level. FSR outcome: No pain, no reaction.
Word recognition and hearing level improved 10 decibels in right ear. Progress:
The left ear had sudden hearing loss 12/00; got new Digital Resound 5000 hearing aids.
Will have FSR on that side 6/01. Contact: <allentravel AT
earthlink.net>, phone 1-972-390-7610. Comment: I still work full time
at my agency (Allen Travel Service) to keep my mind active and young.

G. Charles Spray Jr.RN, BSN. - FSR (5/99), Dr. Jeffery Williams at
JHU, 10 sessions
Homehealth nurse & Masters of Social Work student. Diagnosed:
3/99 at age 43. Symptoms: tinnitus, pressure, fullness, dizzy
spells, positonal vertigo, distorted/garbled hearing in affected ear. hearing tests near
normal, with affected ear slightly abnormal. Results: fatigue right
after treatment. Comments: After a consult with a Micro-Surgeon and a
Gamma-Knife Radio-Surgeon at Emory, we discovered that my tumor was two irregular in shape
to use either procedure, and both gladly refered me to JHU. Dr. Williams and his team are
very professional, and I have no reservations in recommending the JHU team to anyone
needing an intervention of this nature. Being a nurse, I speak the same language as
the doctors and the insurance company, and it helped faciliatate the process.If
I can assist anyone in the future, feel free to contact me by way of e-mail.Contact:
<gcspray AT surfsouth.com>, tel. 912-263-8794. Lives in Quitman,
GA.

Wesley (Wes) Stillwagon
- four-week FSR (9/98), Dr. Silverman at SIUHDiagnosed summer'98, 3 cm at age 58. Symptoms: I was falling
over and at times could not coordinate enough to put myself into bed. I was put on Diamox
to relieve the symptoms and it worked quite well. Results: The symptoms have
not gotten any worse. Follow-up MRI indicates progress as expected. Full recovery
isn't expected until about one year. Contact: <wstillwagon AT
hallowquest.com>, http://www.hallowquest.com/wes.htm

Julia Scott Tew - FSR (early 2000), Dr. Gil Lederman at SIUH, 3 months of weekly
sessionsAfter treatment for huge bilateral ANs, horrible side effects that are now gone.
Diagnosed: 4/95, 3cm bilateral ANs, at age 20. Symptoms: Headaches, hearing
loss. Results: Although my hearing is completely gone, I am feeling
great and living a full life; have begun looking for a job. Comments:If anyone has any questions, please
write me! Contact: <julie-tewlie
AT cox-internet.com>

Jack H. Venner - FSR (4/98), Dr. Jeffery Williams at JHUDiagnosed 1/96, 1.5 cm at age 71. Symptoms: dizzy, unsteadiness and
balance problems, reduced hearing in one ear, feeling of fullness in one ear,
tinnitus. Result: same level of reduced hearing in one ear; tinnitus remained
at the same level; no other problems. Contact: <jac2073 AT
pinehurst.net>, tel. (910) 295-0054.

Stewart Walden - FSR (8/98), Dr. Gil Lederman at SIUHStewart has NF2, and tumor had displaced the brain stem. Diagnosed:
6/98, a 2.4cm AN at age 49. Result (9/02):Tumor shrunk to 20% of its
original volume, brain stem returned to normal position, some improvement in hearing. Contact: <stuwald
AT aol.com>, tel. 516.599.7544. Lives in Malverne (NYC area), NY.

David White - FSR (1/02), Dr Jeff
Williams at Johns HopkinsDiagnosis: 8/01 approx. 2cm at age 56. SymptomsBefore:
10 years of tinnitus, slight hearing loss (noted only after diagnosis)
slight balance problems started a few months after diagnosis. SymptomsDuring treatment: no problems, a little fatigue that increased during
the week of treatment, but was able to walk for up to an hour and a half
around Baltimore each day following treatment (in January!.) No recovery
time. After: A bit of fatigue during the month following treatment,
but no change in schedule or activities. At the 4-6 month period following
treatment, some sense of pressure, discomfort, tingling in that side of the
face, some increase in dizziness with sudden head turns or quick movements.
Nothing that interfered with any activity. No treatment for these temporary
symptoms. Result(12/02) 11 month MRI shows tumor shrunk to
15x13X10 mm. From JHH: "there is no evidence for toxicity or adverse
effect in the surrounding normal brain." Balance about the same as
before treatment, hearing has not been tested yet, no major change. Contact:
through Kathryn White <kgwhite AT aol.com>

Ya'akov Almor - surgery (1/97), Israel, then single-session radiosurgeryplanning to take no chances at a long recuperation the second time aroundDiagnosed: 2.5 cm left AN. Lives in Herzliya, Israel. Contact:
<mrktdrct AT netvision.net.il>

Marion
Donehower - FSR (3/99), Dr.
Lederman at SIUH; partial surgery (11/99) at UCSF.Marion's post-FSR story describes the typical symptoms of a gigantic AN, and
illustrates the risk of treating very large ANs with radiosurgery
alone.Diagnosis: 4/98, 3.8 AN at age 52. Resultof FSR: hydrocephalus, life-threatening compression of brain stem. Result
of surgery: facial paralysis, dry eye, weakness and dizziness -- all slowly
improving.

Ellen Farfel
- Surgery at NYU by Dr. Noel Cohen in 1988; FSR (7/99), Dr. Gil Lederman at SIUH, 4 sessions1st diagnosis: 1988, 7mm right-sided AN at age 57. Result
of surgery:
Hearing improved, headaches everyday for three years. 2nd diagnosis:
1999, 1cm regrowth. Symptoms: Balance problems, dizziness, no
useful hearing in right ear. Wear hearing aid in left ear. Update: I am
writing to tell everyone about the new hearing system I am wearing. My right ear is deaf
because of the acoustic neuroma and I wore a hearing aid in my left ear. Now with the new
units (behind the ear type) I can hear on the right side! The unit on the right side is
really a radio transmitter and picks up sound on the right and transmits it to the left
ear hearing aid. I can hear much better all around me now. I heard of a cros hearing aid
but I expected it to be a wire across my head. There may be such a system but it is not
the one I have. The units are manufactured by Telex. I am very pleased with the
set up and hope others benefit from the same thing. If I can help others with more
information I would be glad to. Comment: after
surgery, no one warned me it might grow back.Contact:
tel. (732) 914-1450 or e-mail <ellenl AT webtv.net>.

Grace E.
Foote - right surgery 8/97, left FSR 10/98, right
FSR 5/00 (at SIUH)NF2 patient, bilateral ANs treated by FSR (one at 4cm, the other as regrowth after
surgery). Diagnosis: 6/97, diagnosed with bilateral AN's
(NF2). 1st Treatment: (8/97) Surgery for the right one. Result
of surgery:
total loss of hearing, facial paralysis to this day. 2nd treatment:
10/98, left AN measured roughly 3x4x3cm and was treated at Staten Island. Result
of FSR:
no loss of hearing or facial nerve function. 3rd treatment: 5/00, right
AN decided to grow back (still tiny but already causing problems) and was treated at
Staten Island. Progress: Now I am
"watch-and-see-if-anything-new-grows" status; though I have NF2, thankfully the
only tumors in my brain are the two AN's and they have both been treated and are stable. Comment: Anyone looking for an
objective opinion of the surgery vs. FSR approaches may contact me. Keep your heads up and
wear your smiles. There is hope out there :-) Contact:
<imflying71059 AT hotmail.com>.

Byron
Jones - FSR 6/99, Dr. Jeffery
Williams at Johns Hopkins University Hosp., Baltimore, MD, USA; surgery 5/06 at the House Clinic in Los Angeles, CA, USA.Diagnosed: 3/99, 2.4 cm AN at age 45. Symptoms: Hearing
loss, tinnitus, disequilibrium, slightly altered taste. Results (as of
1/07): Almost seven years after FSR, the tumor has grown significantly
and I had surgical removal of the tumor.
People are still saying that FSR is successful 95% of the time. I hope
that's true. I say if you choose any radiation treatment, you should repeat
MRI every year. Comment:E-mail
questions and other messages welcome. Contact:
<beedj AT atnex.net>. Lives in Georgia, USA.

Chuck Knorr
- bloodless suboccipital surgery (fall'78), Peacock bilateral FSR
(summer'98), Dr. Mei-Chang Cheng, head of the Guthrie Clinic, Robert Packer Hospital,
Sayre, PA.Chuck has bilateral ANs with a family history of ANs, he also has Guilian Berra
Syndrome. Diagnosed: 8/78, left AN 3.5 by 1.5 by 1.2 cm, at age 34; 4/98 right
AN and recurrence of left one. Symptoms: hearing loss, tinnitus, headaches, mild
balance problems. Results: facial paralysis after surgery, corrected by
hyperglossal facial anastomosis and gold eye implant. No tumor growth after
FSR. Currently on Disability. Contact: <lampligh AT uplink.net>

Bill Macdonald
- AN surgery left ear ('86), no recurrence; AN surgery right ear; FSR
right ear 1.4 cm AN (2/00), Dr. Gil Lederman at SIUHBill is a 42-year old (in 5/00) NF2 patient who provides an NF2 perspective
on the treatment decision process.Results: some tingling and
numbness 3 months after FSR treatment, controlled with steroids. (4/05)
Hearing has declined, no other side effects. Comments:
Please feel free to contact me with any questions or comments. Contact:
<BMac2358 AT aol.com>

Susan McCreary
- 6/99, one-shot radiation (not Gamma Knife) by Dr. Oyesiku, Emory Univ. Hosp.,
Atlanta, GA; then, translab surgery in 10/01 through House Ear Clinic in Los
Angeles.Diagnosed: 4/99 at age 49, 2.3cm. Results: (2/00)
5th & 7th nerve paralysis on left side from "radiation effects"; only
partial lid closure requiring round-the-clock eye care to protect cornea ("eye
bubble" at night, eyedrops and moisture chamber in eyeglasses during the day);
difficulty drinking/eating; balance problems; fatigue; nerve pain; spasms at tumor site
(muscle under ear); headaches. (3/00) Fell and broke left ankle, had
ankle surgery. (7/00) MRI shows some cell death. (7/01) MRI showed 10% tumor growth -- now 2.6cm; neurosurgeon recommends surgery by end of year. (10/01)
Had surgery through House Ear in Los Angeles at St. Vincent's Hospital. All of the tumor
removed using translab approach without severing facial nerve; however, 5th and 7th nerve
damaged from earlier radiation. Total loss of hearing in left ear; balance problems. Had
spring surgery on October 29 for eyelid closure and cornea protection. (1/02) Also
have ischemia from tumor pressing on brain stem -- fine motor skills affected
(particularly, handwriting). No headaches or dizziness. (6/02) Ischemia
resolved; handwriting back to normal. Still no headaches or dizziness. I feel better than
I have in years. Working full time as editor. As long as I get enough rest, I am fine.
Seeing facial reanimation therapist for paralysis and balance. Comment: I
highly recommend House Ear -- the highly skilled surgeons there gave me my life back! Contact: <smccreary AT yahoo.com>

Lisa Probst - GK (5/92 and 1995, Stockholm/Sweden), microsurgery (6/98)Lisa contributed an article on Gamma Knife. Diagnosed:
9/91, 2.9cm AN, left side. Symptoms: started with numbness on the left
side of my tongue, extending to the left corner of my mouth and rest of face. Contact:
<Lisa.Probst.lprobst AT nt.com>

Gary Washmon
- FSR (8-9/99), Dr. Jeffery Williams at
JHU; surgery (4/03), Dr. Jackler at UCSF.Gary's AN was the largest ever treated with FSR by Dr. Williams; the
treatment was not successful. Diagnosed
6/99, 3.5 x 3.8cm AN at age 43. Symptoms: High frequency and deficiency
in left ear. Slight balance problem. Double vision when playing racquetball.
1st treatment: FSR (8-9/99), Dr. Jeffery Williams at
JHU, 20
sessions of 4,000 rads total. Result:
A little more fatigue at first. "Only missed work while I was in
Baltimore". Update - 3 months: MRI shows 2mm decrease and substantial necrosis (darkening) of my AN.
"I am feeling
stronger and have resumed all activities with my usual obsessiveness". Update
- 1 year: 9
month MRI showed no growth, no swelling, no additional shrinkage, and continued necrosis
of the tumor. Update - 7/03: this winter, Gary was experiencing side
effects including edema; steroid treatment was not sufficiently helpful, and
this
spring it was decided that the tumor needed to be surgically removed.
The tumor was removed on April 2, 2003, very successfully, at UCSF. (We
found out about Dr. Jackler from Marion's Story in the AN Archive. He
is one of the few surgeons with a lot of experience doing surgery post FSR
on large AN's.) Gary's facial nerve was preserved, for which we were
very grateful. He did develop hydrocephalus, likely due in part to the
prior radiation damage, and he did require a shunt. It has been about
3 1/2 months since that second surgery and he is doing better every day. Occupation: University Art Professor and Department
Chair. E-mail: <GWashmon AT twu.edu>

Harry Whitmore
- surgery (suboccipital) in 1996, Univ. of Washington, then GK (C Model) on 10/9/00 at
Harborview Medical Ctr, Seattle, WA.Surgery: I lost hearing and balance on the right side. Follow-up
MRI in 2000 showed regrowth of the tumor. It was 1 cm long with 3 lumps. Further surgery
was considered too risky so the Gamma Knife was advised. Gamma Knife:
I was given a total of 9 shots with the Gamma Knife. Recovery was quick and I
was back to work the next day. In 24 hours after treatment I noticed that my energy
has improved and balance has improved dramatically. The Gamma Knife has been a
miracle to me. Contact: <HDWHITMORE AT worldnet.att.net>,
addr.
7908 48th St., E. Fife, WA 98424; tel. 253.922.6459

Patricia J. Ameno
To all those who are in need of this surgery, the greatest thing I can tell you from my
own personal experience, is to know your surgeon. I fortunately had one of the best, Dr.
Howard Senter, at West Penn Hospital, in Pittsburgh, Pa. My surgery was 2 years ago when I
was 45 years of age. My A.N. was considerably large, it had started pushing the
cerebellum and the pons to the other side... The symptoms I experienced prior
to surgery was dizziness, especially when laying down or lifting my head to the ceiling,
lack of balance control, facial pain, extreme headaches and neck pain, loss of hearing but
continuous ringing in the ear, irritability and mood swings; just a mess of sorts.
Dr. Senter's approach was a suboccipital cranionomy. He was able to leave the nerve
INTACT without damage. I expected to have facial paralysis... I did not.
I am
deaf in the side that was affected, but was already at that threshold when Dr. Senter
first evaluated me. There was a complication. I developed a CSF leak
and had to have my mastoid resectioned because the leak would not repair itself. My side
effects are bad headaches but managable with medication, and neck pain. So many different
things can happen as a result of this kind of tumor, but I'm doing just fine considering
some of the potential common problems that could have happened. I had been to 3 other
neurosurgeons prior to Dr. Senter. I wasn't impressed. Dr. Senter's skill, and genuine
concern for patient quality care are absolutely amazing. Dr. Senter TAUGHT at Yale. If you
ever had the occasion to meet him, you would immediately know what I mean as far the
feeling you get from him. Genuine patient care, with the knowledge and skill and the
continued ringing motto, "first do no harm". I even had my Aunt flown here
from Florida when she was diagnosed with a malignant brain tumor of a different class at
the age of 82; this after everyone else had given up on her to be treated... Dr. Senter
came through... my Aunt is just 12 days post op, discharged from the hospital and going
through rehab. To all those who need this type of surgery... do yourself a favor and
contact Dr. Senter's office @ (412)-682-6800. You can thank me later! Contact:
<misspata AT kiski.net>. Lives in: Leechburg, Pa.

Gail B. - Treatment: surgery 5/93, Drs. Brackmann and Hitselberger, St. Vincent's Medical
Ctr, L.A. Results: CSF leak, tinninus, minor lid lag. Comments:
they were two of the greatest doctors that a patient could ask for. The entire team in
California was fantastic! I recommend that any patient who is contemplating surgery check
out the record of the House Ear Clinic. This is your life... give it your all. Contact:
<gfb50 AT aol.com> or call 248-681-0780

Diane Carpinelli -
second tumor diagnosed 8 years laterTreatment:
surgery, '91, Dr. Tom Waltz, Scripps Clinic (La Jolla).
Diagnosis 1: 1991, at age 48, can't remember the size but it was
substantial. Symptoms: Symptomatic for at least 1 yr, 8 mos. Hearing
loss, vertigo, dizziness on right side, imbalance. Was told I might have labynthisis or
another virus, HMO did not want to give me an MRI, finally got them to do it. They were
very surprised when the found the tumor. Results: Total deafness in right
ear from AN surgery. Tinnitus a few years later. I take Elavil 3x/day (25 mg). Also use
Vinpocetine (helps w/memory). Sometimes at night I use noise machine -- and acupuncture
has helped with headaches. Diagnosis 2: 1999, meningioma. Will get
another MRI in a few months to see if it has grown. If so, they will use the gamma knife
at La Jolla Scrips Clinic. Comment: I truly believe my AN and T was
because of my many many ear infections, asthma, sinus problems throughout my years of just
being on the planet. Contact: <dcarpinelli AT dataquick.com>.

Mitch
Cohen - spent just 3 days in the hospital.
Diagnosed: left-sided 2.5-3cm AN, 6/99. Symptoms:
one-sided hearing loss. Treatment:surgery 7/99 by
Drs. Weber and Patel at the Medical University of SC in Charleston (MUSC).
Result: (7/99) headaches and some dizziness which seem to be going away. Contact: <SCADMIN AT aol.com>

Rich Darcy - facing a recurrence 27 years after surgery
<radarcy AT bestweb.net>

Michael Hellyer
- has an unusual experience with hearing and a positive one with facial therapy.Diagnosis: 6/93 at age 43, 1.5cm (?) AN.Symptoms: 50% hearing loss in left hear, asymmetric smile developed over
years.Treatment: surgery, Dr. John Leonetti (ENT), Dr. Douglas Anderson
(Neurosurgeon) - Loyola Hospital, Maywood, ILOutcome: loss of hearing starting 24 hours after surgery, moderate facial
paralysisContact: <HotJobs4U2 AT cs.com>Comment: I had two facial therapy sessions with Jackie Diels, at U. of
WI. She was great, but my new employer's HMO would not cover her. I work on and off again
on the exercises she gave me, and see small improvements, but then I stop and regress. My
facial paralysis is no better than it was about 4 months after surgery. One interesting
thing about my hearing: I could hear for about 24-48 hours after my 9-hour surgery, but
then I heard a buzzing for about 4 days, after which I realized I had lost my hearing in
that ear.

Jean - after 23 years and 5 surgeries, still as eager and alert as ever

Hannah
Joyner-
my acoustic neuroma and the surgery changed my
life, in ways both negative and very positive.Diagnosis: Feb 12, 1993, 7cm tumor. Treatment:
Surgery, Feb 16, 1993 by Drs. Bigelow and Judy at the University of
Pennsylvania. Symptoms: Before surgery I had almost no
symptoms, just a bit of numbness on the other side of my face. After
surgery, I had the works (see my story). Contact: <hannahjoyner1
AT aol.com>

Jon
Kantor -NF2 patientDiagnosed: 1988 at age 43, 1.5cm AN. Symptoms: None.
Diagnosed as a result of family screening. Both my late mother and late sister had NF2.
Other affected family members: 16 year old daughter and 28 year old son. Surgery: 1988, Dr. Steven Brem at the Jewish General Hospital in Montreal (he is now at
Moffitt Cancer Center in Tampa, Florida) Results: Deafness on surgery
side. Sometimes may stumble in the dark. No other problems. Am an avid skier, that should
say it all. Other side: No problems for now. Comments: I
always had poor vision in one eye. In my 30's I was told I had cataract that was probably
as a result of a hockey injury. Later discovered that cataracts in young people often
early symptom of NF2. Cataract since removed and vision markedly improved. Contact:
<jkantor AT videotron.ca>

Kathy - surgery 1981Diagnosis: 3/81 at age 34, left-side AN size of an egg, discovered after
an incident where they say my tumor bled into itself. Symptoms:severe vertigo and left side of face numb. Result: lost hearing
- have tinnitus. Still have left side of tongue tasteless and palsy in lower check. Contact:
<firestar41 AT hotmail.com>

Michael Kuechenbergdo your research before treatment, to avoid regrets afterwards
<MKueche AT uillinois.edu>

Benjamin B Lefton
- balance therapy was very helpfulDiagnosis: 4/00 at age 55, left 2.5 cm. Symptoms: 50%
loss of hearing, altered taste on the tongue, difficulty swallowing, balance problems,
occasional dizziness. Treatment: surgery 5/00, Dr. Liligam Sekhar at
George Washington Univ. Hosp. in Washington DC. Outcome: Some facial
paralysis and dry eye problems. Tingling sensation on the left side of the tongue. Total
loss of hearing on the AN side. Therapy for balance has improved balance better than pre
surgery. Fatigue for about six months after surgery. Returned to work one month
after, part-time for about 4 months, then full-time. Comments: I have
made contact with Jackie Diels to set up facial movement retraining. I can't get in until
the end of the year or the beginning of next year unless there is a cancellation. Contact:
<BLefton AT MetalExchangeCorp.com>

Jennifer Masson
- Experienced quick tumor growth.
Diagnosis: 4/00 at age 28, 2 months before the wedding, less than 1cm AN. Symptoms:
hearing at the time of diagnosis was very good, but couldn't hear as well on the phone.
Progress: By the time of surgery, hearing loss was much more
noticeable, and the tumor was 2cm. Treatment: mid-fossa surgery 6/00, LSU
medical center with neuro-otologist Dr. Peter Rigby. Result:
hearing in that ear is basically gone, but no tinnitus or dizziness; some facial
paralysis, but I do see improvements and hope to make a full recovery. Lives in
New Orleans. Comment: I feel my results are a small price to pay to
have the tumor out. Please feel free to contact me. Contact:
<jmpaula AT earthlink.net>.

Marsha Nesler - after surgery
for a huge AN, life will never be the sameDiagnosis: 1/02, over 4 cm AN at age 38. Symptoms: very
severy headaches, dizziness, loss of hearing in my right ear, a feeling of my vision being
blurry, right eye sensitive to light, neck ear and jaw pain, fatigue and some memory loss.
Treatment: 2/02, 13 hour surgery at the University of Washington
Hospital. Result: Total hearing loss. My face has pretty much come back
except for my right eye. I have to put drops in my eye all day long and ointment in at
night. Very bad headaches that keep me from doing what I want. I get fatigued very easily
and also get overwhelmed easily. I have had to accept that my life will never be the same.
Comment: If possible, make sure you have friends or family around you to
question and monitor the care you are receiving after your surgery. Contact:
<mnesler AT nwi.net>; address: P.O. Box 133, Pateros, Wa. 98846

Mary
Shamleffer - applied to Medicare for the cost
of the CROS hearing aid
Diagnosis: 3/99, .6 x .8 cm AN at age 68. Symptoms: hearing
loss, tininitus, feeling of fullness in left ear. Progress: 7/99 2nd MRI
showed growth, .8 x 1 cm. No new symptoms, hearing loss greater. 1/00 MRI showed growth,
1.2 x 1cm. Treatment: surgery3/00 (translab approach)
at UMMC (Univ. of Maryland Medical Ctr), with the "Stealth Station". Follow-up
operation 7/00 to correct CSF leak. Results: Only have hearing loss and
tininitus, as active as before. Comments:I wasfitted
with CROS hearing aids; they do help. I have submitted a claim to Medicare for the cost of
it. Wouldn't it be nice if I could let all ANers who qualify, know that they are covered? Contact:
<WShamleffe AT aol.com>

Julie Slade - you are never too young to have a large ANDiagnosis: 6/98, 5cm AN at age 19. Symptoms: About 1 month prior to
surgery had bad head and neck pain as well as double vision. No hearing loss at all prior
to surgery. Treatment: 6/29/98 had microsurgery at Providence Hospital in
Southfield, Michigan. Result: Lost left ear hearing during surgery. I also have a
very dry eye as well as double vision since the surgery. Contact: <jslade AT
umich.edu>

Barbara Smith - surgery was a
life-altering experienceDiagnosed: 7/97, at age 57. Symptom: hearing loss in the
right ear. Had sound tone 20% so was urged to have immediate middle fossa approach surgery
to save the 20% because I only have 60% hearing in left ear due to heredity on my mother's
side. Treatment: surgery 8/97 at Hershey, Pa. with Dr. May Huang and Dr
Page. Outcome: Was in the hospital 5 days and discharged at my insistence
I was ready to go home. Needless to say BIG SURPRISE! I had ALL the classic symptoms
except no headaches or swallowing problems. About 2 months post-op I was still learning to
walk all over again, having cornea problems with my eye, double vision...hated to look in
the mirror. It is now 4 yrs post surgery... it's still hard and an every day battle. I am
doing quite well...all things considered. I had a gold weight implanted 3 mo. after
surgery, and both tear ducts blocked 1 year later. Both have been of great benefit to me. Comment:
It indeed is a life altering experience.. but there is life after AN. If I can be of help
to anyone please contact me below. Contact: <honeybee614 AT
webtv.net>, tel: 570-875-1149. Lives in: Pennsylvania.

Debi Spayd - small ANs can be big trouble, if they cut off blood flow to the
cochlea<spayds AT voicenet.com>

Susan - balance
improved with consistent fitness trainingDiagnosis: 8mm AN at age 42. Symptoms: sudden
hearing loss, tinnitus with roaring. Later, I realized the couple of vertigo episodes I
had had were symptoms, as well as dizziness when standing with my eyes closed. Treatment:surgery 5/98 (Middle Fossa) by Dr. Gerald Brackmann at the House Ear Clinic, Los
Angeles. Results: extreme dizziness and room spinning, upset
stomach, and inability to focus and walk well. However, much of that subsided by the time
I left the hospital. Comments: For the last 7 months, I have been
working out with a personal trainer. She has given me strengthening exercises and
new ways of focusing for my body mechanics. They have been the greatest help with my
steadiness, fluidity, agility, and overall confidence. I cannot say enough about
fitness training and finding the right person that can help you and encourage you not to
give up or settle for less than what you had before AN.Contact:
<louisjd AT aol.com>. Lives in Houston, Texas.

Toby Tessler
-Diagnosed: 1/99, right-sided 3cm AN at age 53. Symptoms:
I was experiencing hearing loss and imbalance on stairs for about eight years. Last
year I started feeling a tingling on the right side of my tougue. In December I started
getting tinnitus. Treatment: microsurgery (translabrinthine) 1/99
by Drs. Vaughan and Ostrup at Scripps Memorial Hospital, La Jolla, CA. Results:
(7/99) I feel I am doing very well. I was able to move from San Diego to Chicago in May. I
still have a tingling on my tongue and my taste is off. My sleeping pattern has been
disturbed; I find that I take a sleeping pill once to week to make sure I can a good
nights sleep. My balance is affected at night, if I'm very tired; night driving isn't
always comfortable. Contact: <TT4134 AT aol.com>. Lives
in Chicago, IL.

Mary Walker -
have been on disability from my job since surgery, which has just run out; starting to
investigate SSA disability.Diagnosed: left-sided AN, 8/98. Symptoms: loss of
hearing and constant ringing; I believe I had some problem with balance but it seemed
"normal to me". Treatment:surgery 11/98 by Dr.
Woods at University Hospital in Syracuse, NY. Results: (6/98) Still
recovering after 6 months. Facial nerve was preserved, but after 2 weeks lost all facial
control on left side. Just started getting some movement control back in April and is
still improving. Unable to work since the surgery.Contact:
<Walker6828 AT aol.com>

David Wrubel
- only the best will do for a large ANSurgery 4/00 for a 5.5 cm AN with Drs. Friedman and Hitselberger at the House Clinic, Los Angeles, CA.Diagnosed: 2/00. Symptoms: high frequency
hearing loss, balance problems. Results: hearing loss, temporary facial
paralysis, minor balance problems. Otherwise, life is as before. Contact:
<dwrubel AT attbi.com>. Lives in CT.

Gil Kalderon- surgery (end of 1997), Dr. Felix Ommansky, Hadassa
Hospital, Jerusalem, Israel.
(2/99) Right-sided AN, almost all of the tumor was removed (unfortunately - not all of
it). I have to pass the MRI once a year. I am 29 years old. Results:
I work full-time and manage a totally regular day. I still do not see sharply when I look
to the right, I am deaf in my right ear and I HOPE that nothing will
deteroriate. Comment:
Personally, I don't think that I will be able to pass another surgery (I PRAY THAT I WILL
NOT HAVE EVEN TO TAKE THIS SENARIO AS AN OPTION) and I really hope that if anything
happens I will handle with it Not by surgery. Contact: <gil-kal AT
inter.net.il>

Simon Rose- hope in time (it will take many years) I can
regain a part of my pastDiagnosis: 9/01, left-side AN at age 39. Symptoms: strong
tinnitus. Result of surgery: a severe case of emotional and cognitive
disorders. Comment: If you want any further information about my
case, please drop me a line and I will try and assist.Contact:
<simonrose AT ntlworld.com>. Lives in:
London, England

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accuracy of the information contained herein; all facts included must be confirmed by
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